Still thankful for autism
by Barbara
It has been two years since we started our amazing journey with Scottie as the Easter
Seals 2008 National Child Representative. Time really gets away from us, but we frequently talk about the trips that we took and the amazing opportunities we had to meet and speak to so many folks about what Easter Seals and autism have meant in our lives. We occasionally still get a chance to speak at some Easter Seals events, and it is always an honor.
So last week, as we enjoyed another Thanksgiving Day together as a family, I was thankful for my busy family, our health and all the help, love, hope and opportunity that Easter Seals brought into our lives. In that spirit, and as we enter this 2009 holiday season, the Easter Seals and Autism blog is running a post I wrote for Thanksgiving a few years back. And yes, I am still thankful for autism.
What I am thankful for
by Barbara Gaither
This time of year, I find myself reflecting on what I am most thankful for. I have so many things in my life that have truly blessed me, but one of the most amazing blessings is having an autistic son.
Now, I can’t say that I’ve always felt that way.
When Scottie was first diagnosed with autism, I was devastated. He was our last child and our first and only son. We pinned so many hopes and dreams on him when he was born, and with that diagnosis — those dreams seemed to be crashing down one by one.
As the years passed since that initial diagnosis in 2002, I’ve grown more and more thankful for him and his diagnosis. Many would think that I’m crazy — and maybe I am a bit, but he is such a tremendous joy to me and our entire family. He has taught me not to take the little things in life for granted — and by watching him grow and learn, I have learned so very much.
It’s simply amazing. Sometimes, I wonder what life without him would be like, or even life without him being autistic and I cannot imagine it. At this point I don’t even want to. I wouldn’t change a thing about him even if I could.
Being selected as the Easter Seals 2008 National Child Representative not only gives a lot more people an opportunity to know and love this wonderful little boy, but it gives us
— as a family — a chance to give back. We can give back to Easter Seals as an organization because they have given us more than words could ever express.
It also gives us a chance to offer hope to other families facing the darkness of autism.
I hope that somehow, by seeing and hearing our story, there will again be light.
So, as we gather to celebrate this Thanksgiving, I will give thanks for Scottie and his sisters, Sarah and Carly, as well as my husband Shannon and all of our family, including our wonderful Easter Seals family.
Watch a video about Scottie and the Gaither family and see how you can give help and hope to children like him.
March 8th, 2010 at 8:23 am
Adriana,
Thanks so much for sharing about your son. Though I do understand where Nate’s dad is coming from in some ways, it is so nice to hear from another mom who gets what I am saying. Scottie is growing in to a young man right before my eyes and each new stage brings with it new challenges. I know that there are still many difficulties and things in the future to overcome. But, my message is, and has been all along, that there is hope when you are the parent of an autistic child.Not everyone gets the opprotunity to benefit from early intervention (which is also a big part of our story), but we can all benefit from a message of hope and from sharing with one another.
I cannot imagine how tough your life is with your husband deployed to Iraq and three children to care for on your own. Thanks for your sacrifice and the sacrifice of your husband on our behalf. Keep finding reasons to smile.
I pray safety for your husband and strength for you in the months ahead.
Peace,
Barbara Gaither
March 6th, 2010 at 1:56 am
My son is 4 years old; I always knew there was something special about him. He has Autism; he has good days and bad days, like all of us. His autism is moderate and he needs therapies. Sometime he says things that can embarrass me but I have learned to understand him. I am not saying that is easy but who ever thinks that parenthood is easy, they are not doing their job. I have a 5 year old and a 3 year old I looove them all; contrary of what anybody would think my autistic 4 year old is my easiest child. I am not saying that therapies, doctors appointments and especially haircuts don’t get overwhelming, it is! Going to places and dealing with the people that has no idea what my son has, thinking I am a bad mother or my son is a bratt is annoying. However when my son tells me the funniest things I feel is all worth it. My husband is deployed in Iraq, dealing with three little kids; one with a “disorder” with no family around and without my husband for an entire year is not easy at all. When I think I can’t keep going with everything I have to do every day …he makes me smile. Last week we went to his developmental doctor and I told him –I am very proud of you because you behave well. He turned around and even though he didn’t make any eye contact he told me – No! mami, I am proud of you because you take care of me. I cried.
He tells me things that nobody would understand but if you pay attention what he is saying is very logic sometimes is too much. Therefore if you ask me, yes! I do believe is a blessing!!! Besides the therapies besides the awkward moments that at the moment can make me feel like hell afterwards when I realized how he said it, I have to laugh. We need autism awareness, we need support but especially we need to see autistic kids as unique like all of us should be… different and there is nothing wrong with being different , since that is what brings the colors in this earth.
December 8th, 2009 at 5:29 pm
lol….i do think your crazy. autism is a blessing? I have to be reading this wrong.
well, let me know about your ‘blessing’ as he gets older. They do get older, and they also get stronger.
Where is Scottie going when he gets older? Im sure Easter seals has the perfect program for him where everyone will love him and care for him like you do.
Or maybe you have another place. Lets face it, everyone should be blessed to have a child that will end up in an institution because as adults, they just arent that cute anymore.
You are looking at life through rose colored glasses. Having a son with autism is NOT a blessing. My son is a blessing, as my other son is, but I wouldnt wish autism on my worst enemies child. I cant believe you find autism as a blessing.
you learned so much? at what expense did this lessong cost you?
I’m not sure how to take this, but it certainly struck a chord with me.
What exactly are you advocating for?
As I left my son in the hospital room, the last thing he said to me was, “I hate being different”.
If someone give this letter to my son, he would tear it up. He struggles almost daily due to his autism. What part of a child struggling you consider a blessing?
December 8th, 2009 at 10:28 am
Ms. Chatman,
I thank you for the kind words about our son and his story. He is truly a blessing, as I am sure Conner is to you as well. We have been through our share of ups and downs, as well as fighting to get services that Scott needs in the public sector. The difference, I guess for us was the early intervention and services provided through our local Easter Seals early on that really made the biggest gains for him. We have one more year to go before we hit the middle school years, and frankly I am a bit worried about how that transition will be. Scott is very bright and does well in most settings, but having already survived middle school twice with two “typical” children, it was an awful parenting experience in itself. I wish I had lots of wisdom or answer for you to help Conner at this point in his life, but unfortunatley, you are traveling what is yet to be common ground for me. I just suggest getting involved with any and all autism support groups in your area, contacting the nearest Easter Seals office to see what they have to offer, continuing to believe in your son and fight for what you know he needs and what will be best and surround yourself and your family with positive infuences.
I wish you and your family all the best,
Barbara Gaither
Scottie’s mom and Autism advocate
December 8th, 2009 at 10:18 am
Mr. Welsh,
I am very sorry that you feel that my letter/blog about autism would in some way be hurtful in gaining help for the autism community. I am just as aware and concerned about the ever-rising number of children being diangosed with autism. I too am concerned about the lack of services available at times and in certain areas of the country. I want to see, in my life time, that someone finally figures out the true cause of autism and in doing so finds a way to prevent others from ever having to experience it. I have many friends and associates who deal with autism every day. Not everyone has a story like ours and I am well aware of that, but I feel that my role as Scottie’s mom is to encourage others that are navigating through the early days of diagnosis of autism and to give hope. We have felt much of the anger and disappointment that is evident in your post, but at the end of the day, that did not serve us or our son well. We have chosen to look each and every day at the positive side of life with Scottie, autism and all. I pray that you will find some peace in your situation with your son.
Barbara
Scottie’s mom
Autism Advocate and Love of someone LIVING with autism
December 5th, 2009 at 12:24 pm
To the Gaither Family :
I just viewed Scottie’s video. Beautiful. Such a blessing to see your handsome son ACTIVELY PARTICIPATING in a choir/bell program, inclusive classes at school and playing/participating in Soccer. I too have a wonderful son who will be 13yo tomorrow. He has Asperger’s/HFA. He was’nt offically diagnosed until he was in 4TH grade, not that we did’nt try to get him help..for many years, probably starting at age 4 or 5 yo. We looked everywhere !!! And the expenses have driven us almost to bankruptcy ..yet we are “too rich/resourceful” for state/federal aide, because we too work. We also reside in Central Georgia, but I can’t locate Easter Seals services here . ??? I am with you..though a challenge, I would’nt change my son..and I can understand the thankfulness for autism to a degree. However, he never could actively particpate in choirs, or team sports, and he’s NOW failing 7TH grade ..although SMART as a whip.. and in an inclusive classroom with co-teaching, pull out for SLP pragmatics and sensory diet. He has awesome caring teachers..but they too are now becoming frustrated and now trying to peg his shutdown behaviors as “willfull disobediance”. I could no longer afford private OT and SLP services he received in 3rd and 4th grades..and after 2 years of fighting our school district for these obviuosly needed services he finally gets OT and SLP services there. But he’s not participating..and they often can’t “engage” him. Part of that is being a TEEN now..but it’s also his ASD. At the Middle school level..OT services and SLP services are much different than what I observed available in the elementary setting. I placed him in public school in 2007..for accomodations..as his private school could no longer provide him what he needed. His caring 4TH grade teacher there suggested the resources available in the public system…but with a high functioning student it is literally a FIGHT to get these services. I mean a true FIGHT !!
So, any idea WHERE we can see if Easter Seals can help our boy ?? We could’nt do “early intervention”..because he was’nt considered ASD back then. However, he is full of potential ..if we can just somehow tap it…and I’m still looking for help afforable and locally. Any suggestions ?? Please let me know. mcgkcc@att.net
Conner’s Family
Macon, GA.